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Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration Volume 21, 2020 - Issue 5-6
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Clinical

Understanding the needs of people with ALS: a national survey of patients and caregivers

Kate T. BrizziHealey Center for ALS, Massachusetts General Hospital, Boston, MA, USA, ;Department of Medicine, Division of Palliative Care, Massachusetts General Hospital, Boston, MA, USA, Correspondence[email protected]
ORCID Iconhttp://orcid.org/0000-0002-0049-7462View further author information
ORCID Icon,
John F. P. BridgesCollege of Medicine, Ohio State University, Columbus, OH, USA, View further author information
,
Jill YersakALS Association, Washington, DC, USA, View further author information
,
Calaneet BalasALS Association, Washington, DC, USA, View further author information
,
Neil ThakurALS Association, Washington, DC, USA, View further author information
,
Miriam GalvinAcademic Unit of Neurology, Trinity Biomedical Sciences Institute, Trinity College, Dublin, Ireland, View further author information
,
Orla HardimanAcademic Unit of Neurology, Trinity Biomedical Sciences Institute, Trinity College, Dublin, Ireland, View further author information
,
Chad HeatwoleMedical Center, University of Rochester, Rochester, NY, USA, View further author information
,
John RavitsDepartment of Neurosciences, University of California, San Diego, CA, USA, View further author information
,
Zachary SimmonsPenn State Hershey Medical Center, Hershey, PA, USA, View further author information
,
Lucie BruijnTranslational Medicine, EMEA, AVeXis, London, UK, View further author information
,
James ChanCenter for Biostatistics, Massachusetts General Hospital, Boston, MA, USA, View further author information
,
Richard BedlackDepartment of Neurology, Duke University Medical Center, Durham, NC, USAView further author information
&
James D. BerryHealey Center for ALS, Massachusetts General Hospital, Boston, MA, USA, View further author information
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Pages 355-363 | Received 12 Feb 2020, Accepted 20 Apr 2020, Published online: 12 May 2020

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Eilis Conroy, Beatriz Vélez-Gómez, David O’Brien, Mark Heverin, Orla Hardiman, Christopher McDermott & Miriam Galvin. (2023) IMPACT-ALS: summary of results from a European survey of people living with ALS. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 24:7-8, pages 641-650.
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Zeliha Tülek, Aylin Özakgül, Naile Alankaya, Aynur Dik, Alper Kaya, Pemra C. Ünalan, Ayşe Nilüfer Özaydin & Halil Atilla İdrisoğlu. (2023) Care burden and related factors among informal caregivers of patients with amyotrophic lateral sclerosis. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 24:1-2, pages 125-132.
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Naoko A Ronquest, Kyle Paret, Aaron Lucas, Malgorzata Ciepielewska & Melissa Hagan. (2022) Quantifying the Value of Introducing an Oral Drug Delivery Option for Edaravone: A Review of Analyses Evaluating the Economic Impact of Oral versus Intravenous Formulations. ClinicoEconomics and Outcomes Research 14, pages 499-511.
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Bernadette Wigand, Ina Schlichte, Stefanie Schreiber, Johanna Heitmann, Thomas Meyer, Reinhard Dengler, Susanne Petri, Aiden Haghikia, Stefan Vielhaber & Susanne Vogt. (2022) Characteristics of pain and the burden it causes in patients with amyotrophic lateral sclerosis – a longitudinal study. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 23:3-4, pages 284-291.
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Christopher Poppe, Luzia M. Iseli, Martine Verwey & Tenzin Wangmo. (2022) Bereavement and Support Experiences of Informal Caregivers of Persons with Amyotrophic Lateral Sclerosis: A Qualitative Study. Journal of Social Work in End-of-Life & Palliative Care 18:1, pages 63-79.
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Ling Lian, Minying Zheng, Ruojie He, Jianing Lin, Weineng Chen, Zhong Pei & Xiaoli Yao. (2022) Analysing the influencing factors on caregivers’ burden among amyotrophic lateral sclerosis patients in China: a cross-sectional study based on data mining. BMJ Open 12:9, pages e066402.
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Christopher Poppe, Martine Verwey & Tenzin Wangmo. (2021) “Walking a tightrope”: A grounded theory approach to informal caregiving for amyotrophic lateral sclerosis. Health & Social Care in the Community 30:5.
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Katharina Linse, Elisa Aust, René Günther & Andreas Hermann. (2022) Caregivers’ View of Socio-Medical Care in the Terminal Phase of Amyotrophic Lateral Sclerosis—How Can We Improve Holistic Care in ALS?. Journal of Clinical Medicine 11:1, pages 254.
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Jacqueline Gillespie, Antoine Przybylak-Brouillard & Christine L Watt. (2021) The Palliative Care Information Needs of Patients with Amyotrophic Lateral Sclerosis and their Informal Caregivers: A Scoping Review. Journal of Pain and Symptom Management 62:4, pages 848-862.
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Anna Markella Antoniadi, Miriam Galvin, Mark Heverin, Orla Hardiman & Catherine Mooney. (2021) Prediction of caregiver quality of life in amyotrophic lateral sclerosis using explainable machine learning. Scientific Reports 11:1.
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